- Title
- The perspectives of haematological cancer patients on tissue banking
- Creator
- Turon, Heidi; Waller, Amy; Clinton-McHarg, Tara; Boyes, Allison; Fleming, Jennifer; Marlton, Paula; Harrison, Simon J.; Sanson-Fisher, Rob
- Relation
- NHMRC.1073317
- Relation
- Oncology and Therapy Vol. 4, Issue 1, p. 91-102
- Publisher Link
- http://dx.doi.org/10.1007/s40487-016-0019-x
- Publisher
- Springer
- Resource Type
- journal article
- Date
- 2016
- Description
- Background: A high level of support for tissue banking has been identified amongst both the general public and patients. However, much debate remains about the regulatory framework of tissue banks. Objective: This study explored the views of haematological cancer patients regarding tissue banking and how tissue banks should operate. Methods: Haematological cancer patients from three outpatient clinics in Australia completed a questionnaire examining their preferences for tissue banking as well as items about their sociodemographic characteristics, disease and treatment history. Results: The majority of participants (95%) reported being willing to allow their leftover tissue to be used for medical research. Three quarters (76%) supported the idea of their medical record being linked to their tissue sample, and 77% preferred a blanket (one-off) consent model for future research use of their tissue sample. Only 57 (27%) participants had been asked to give a tissue sample for research, 98% of whom gave permission. Conclusion: The majority of haematological cancer patients are willing to donate their leftover tissue to a tissue bank and have their medical records linked to tissue samples and prefer a one-off consent process. These novel data from potential donors inform the debate about how tissue banks might operate. Funding: Strategic Research Partnership Grant from the Cancer Council NSW to the Newcastle Cancer Control Collaborative (New-3C) and infrastructure funding from the Hunter Medical Research Institute (HMRI). A.W. is supported by an Australian Research Council DECRA fellowship (DE150101262). T.C.M. was supported by a Leukaemia Foundation of Queensland Post-Doctoral Fellowship. A.B. is supported by National Health and Medical Research Council (APP1073317) and Cancer Institute NSW (13/ECF/1–37) Early Career Fellowships.
- Subject
- biobanking; consent; hematology; oncology; tissue banking
- Identifier
- http://hdl.handle.net/1959.13/1324909
- Identifier
- uon:25151
- Identifier
- ISSN:2366-1070
- Rights
- This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 International License (http://creativecommons.org/licenses/ by-nc/4.0/), which permits any noncommercial use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.
- Language
- eng
- Full Text
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